About DEBRA New Zealand

  DEBRA New Zealand is a registered charity providing access to medical advice and support for people and families affected by all types of EB.  

Established in 1980, DEBRA New Zealand’s founding focus is as relevant today as it was 30 years ago:

  • to support DEBRA families;
  • to ensure those with EB know they are not alone;
  • to ensure practical advice and guidance is shared;
  • to ensure clinicians and families have information on and access to current best practice care and treatment.
  • Butterfly chilldren.

    DEBRA NZ aims to improve the quality of live for all people living with EB

DEBRA NZ became a Charitable Trust in 1985 and registered with the Charities Commission in 2008.

DEBRA NZ provides those with EB and their families with emotional support, educational information, and assists them in obtaining appropriate medical, social and genetic counselling.

DEBRA NZ provides information to doctors and other health professionals as in most cases the first time they come across EB is when a child in their region is born with EB.

DEBRA NZ is a hub for spreading clinical expertise, the latest international research, and knowledge from others’ personal experiences.

DEBRA NZ aims to raise awareness and educate the public and medical professionals about EB.

The joint patrons of DEBRA NZ are: His Excellency Lieutenant General The Right Honourable Sir Jerry Mateparae, GNZM, QSO, Governor-General of New Zealand and Her Excellency Lady Janine Mateparae.

DEBRA NZ has three Trustees.

DEBRA NZ is a member of DEBRA International. Our Director is the past President of the international committee.


+64 (0)4 389 7316   debra@debra.org.nz   Contact an EB nurse

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